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Life in ashes and a search for the inner Phoenix [May. 17th, 2010|10:23 pm]
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Over the previous months there has been a noticeable lack of contributions to this blog. Regular readers will be aware I suffer from exceptionally bad migraines, and my health has taken a drastic turn for the worse. Increasingly during 2010 I have found myself paring back to my own essentials, basic living, earning my bread and fighting for some happiness where I can find it. My chief pleasure and occupation (writing) has become painful for me. Although I’m known for being somewhat sardonic I have an innate distaste for moaning about myself; sadly there hasn’t been a lot of scope for much else recently when I’ve sat down to write. I’ve been working on a few fiction pieces but as I’ve become more ill even those have become a struggle. I am not giving up, of course.

About six months ago, what were once simply painful daily migraines began to morph into a strange, constant stabbing pain in my right eye. After that it wasn’t long before I began to have episodes of slurred speech, very weak limbs, numbness and tingling along the right side of my face and through my arms and legs. I was finding it hard to stay awake, hard to concentrate on projects and hard to find my words. In every appearance it looked as if I’d had a stroke, but my neurologist insisted I had not. I trust him, he is a brilliant doctor. Eventually these symptoms became overwhelming, and I passed out while crossing a road with my family. Two weeks after that I was insensible, asleep off and on for nearly a week. In the midst of all this I had several MRIs, CAT scans and a lumber puncture while in Queens Hospital. They discovered I had either a very small AVM or Cavernoma.

I was released from Queens hospital three weeks ago and told to be on bedrest for two weeks. I was at once relieved I had finally achieved a diagnosis that could possibly be cured; AVM/Cavernomas can be removed surgically, and equally afraid that I had what felt like confirmation of the ticking bomb I’ve long believed to be inside my head. My Father had a brain aneurysm and I believe the tendency to be hereditary. On my Mom’s side of the family stroke is extremely prominent, so going through this at 31 does not instil me with confidence.

To make a tedious story more tedious, my own neurologist does not agree with the Queens assessment that my brain potentially needs a bit of crafty knife work. He is of the opinion that I am experiencing migraine with neuro-deficit, and the small Cavernoma was a coincidental find, but it is not the cause of my symptoms. How do I feel about this to-ing and fro-ing?

Well I can safely say my life has been as nearly ruined as it could be, short of the death of my loved ones. I have lost my health utterly now, I’ve lost my body. I can make myself pretty and wear a nice new necklace but not leave the house. I am writing this now and I’ll probably be worse tonight from the effort. Last week I fell down the stairs and broke and dislocated my middle finger. I don’t recall feeling dizzy at the time of the fall, but it’s telling of my general weakness. When I landed at the bottom and saw my mangled hand I stared at it in shock. All I could think was “Thank god that wasn’t the aneurysm!” I realised that in the split second when I started to fall I believed that in that moment I was dying, and I mourned for my husband and son in the next room about to witness it. That is how I am living now. Yes, I know there are people worse off but right now I’m grieving for what I’ve lost of myself. I’ve been fighting for all of my 20’s to overcome migraines and now I’m bedbound most of the day not from pain but weakness.

Matthew is on week two (or maybe three!) home from work to care for me and Alex so we’re praying to Jupiter and Mars that his career and annual leave will hold out. My drugs are being increased every fortnight in the hopes they will stop the migraines and stop any further stroke-like damage so I can at least play catch up.

Well, as I promised in the title, I am searching for the Phoenix from the ashes. Firstly, I’ve been remarkably happy since I fell down the stairs. The appearance of robo-finger cheered me immensely; it looks like I’m giving the world a gigantic fuck off with my middle finger. For someone who speaks softly it’s perversely thrilling. The sudden realisation that I did not have an aneurysm in that tumble of eternity combined with becoming part-Borg gave me a permanent fit of the giggles. On the back of that I decided we were long overdue for a holiday, but of course not the kind we usually take where we tramp around cities and palaces and coffee houses. That requires far too much stamina for what I’m offering this year, so instead we’ve opted for Menorca. I initially rejected it because I lumped Menorca in with Ibiza without knowing anything of it, and I didn’t want to go anywhere near a club. Matthew insisted I do some homework (shame on me) and I was instantly infatuated not only with the island but with a gem of a hotel. Our lovely Uncle Mike agreed to join us so it will be me relaxing on a beach come July with three lovely men.

The other personal outcome has been my decision to pursue creating a historically authentic, one of a kind dolls house, something I’ve wanted to do my whole life. I’m on a silent campaign to transform the dining room into an entire village but Matthew is insisting we need a table. He thinks I should be happy with just one palace...

Matthew and Alex have been amazingly supportive to me, and I’m trying to be so to them. Alex is a very mature almost 4 year old but he’s still very young to have such a poorly Mama. We’re about as attached to each other as a second skin and it’s been frightening for him to be separated from me during hospital stays. He’s grown up very quickly in some ways, always telling me not to exercise and to let him and Daddy carry things. I spend a lot of time trying to be with him as normally as possible, and I treasure the good days I have when we’ve walked out in the sunshine together.

On the writing side of things little has happened but for the fact that I’ve been invited to set up a profile on the awesome http://www.lazygramophone.com/ and they’ve printed a short story of mine onto postcards! It’s called Naress, check them out.

This shiny little blog piece has taken me an hour to write due to the marvellous robo-finger. It’s not as slimline as Sevon of Nine’s but I flatter myself that it will still have the power to assimilate anyone in my path.

[User Picture]From: keith_london
2010-05-18 07:28 am (UTC)
I've not heard of cavernoma until now, and on googling it, see that there is even an alliance set up. Sounds like you are coping well with the situation you have found yourself in.
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[User Picture]From: erinnorman
2010-05-18 07:56 am (UTC)
Thanks very much, I'll have a look at that!
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From: paulatthehug
2010-05-24 09:52 am (UTC)

Cavernoma Alliance

Hi Erin, if you've not done so already do sign up with us over at CA UK. We've got a mailing list where members chat and there's lots of us with similar problems to you. In my experience it's a real comfort to realise you're not the only one with the symptoms you've got (I've never even heard of cavernomas until I was diagnosed which is why set up that web site for CA UK).
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[User Picture]From: snippetygiblets
2010-05-18 08:16 am (UTC)
Few could have survived the last couple of months with such bravery, hope and humour Erin ! I really hope the medication works for you soon and that you don't become fully assimilated :0)
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[User Picture]From: ron_broxted
2010-05-18 10:01 am (UTC)


You (and Mr Cloven Claw) will love Minorca. Never been but it is kid friendly, lots of little coves.
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From: goodqueenmolly
2010-05-18 11:58 am (UTC)
Oh Erin, I don't not what to say except a heartfelt "f*cking hell"
I am so glad that this wasn't an aneurysm and am keeping my fingers crossed that your medical team can help you to make an informed decision about how to manage/cure this problem. For what its worth all my best wishes are on their way to you.

Oh and congratulations on your story success!
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[User Picture]From: iamhanuman
2010-05-18 01:35 pm (UTC)

Says it All

wonderful piece. menorca will be a cure.
stick some pins in your neck and the sun will shine <3
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From: (Anonymous)
2010-05-20 10:58 am (UTC)

migraine devices

I will send you 3, 5 KG of my pressure points migraine devices to help other migraine patients too.
Till then you can ask someone to do it as shown in my video step by step how to do it at home.
My migraine pressure points devices stop not only all kinds of migraine headaches but also all accompanied symptoms of the migraine headaches as vomiting, red eyes, photophobia, etc.
You can easy see if all what I say true or not, if you do my finger pressure points test for migraine headaches in time of migraine attack.
You will see within less than one minute how the headaches will stop 100% and red eyes return into normal color within 3-5 minutes. You can look direct to the light and you will see that your photophobia doesn't exist anymore.
See my web site to know how to do the migraine pressure test in good way:

The real end of migraine headaches was done in 1998, and you know that in surgery no one can hide or modify the results. Results talk in surgery. After the surgery I tell my migraine patients to do all the things that usually provoke for them migraine attack as walking under the sun, cheese, chocolate, ice cream, etc, and they will see that migraine headaches will never come again.
My migraine surgery is simple and it is in the skin only so it can be done under a local anesthesia and without any kinds of side effects.
My migraine discovery was very surprised, even it's very hard to be believed, what I can do if this is the truth.
I work since 1998 alone and no one help me, because of that they stole my migraine surgery, devices, and pressure points and published their stolen works in medical journals.
Now about your situation. First you have to be sure that your blood pressure will never be high, how? It's easy, buy the wrist apparatus for blood pressure measurements and see your blood pressure every evening – this kind of apparatus help you to see your blood pressure very easy way.
Migraine patients usually have low blood pressure.
Can you tell me what your blood pressure in this situation was: (After that it wasn’t long before I began to have episodes of slurred speech, very weak limbs, numbness and tingling along the right side of my face and through my arms and legs)?
(He is of the opinion that I am experiencing migraine with neuro-deficit, and the small Cavernoma was a coincidental find, but it is not the cause of my symptoms. How do I feel about this to-ing and fro-ing?
I agree with him you have migraine and cavernoma but you have to do vascular cerebral angiography to see if this is cavernoma or small AVM.
But now to be in save you have to control very good your blood pressure.
When you will use my migraine devices you will stop all what caused by migraine disease and in this way I hope that all what you have is due to your migraine headaches.
Maybe you have basilar migraine, this kind of migraine can explain all the symptoms that you have, and pressure on the points # 3 from both sides can stop all the symptoms see my devices for places# 3.
If your other symptoms caused by cavernoma or AVM when you have high blood pressure this mean you have to do the surgery for it. I hope that all from your migraine and small cavernoma was a coincidental find.
I hope that I can help you to be complete healthy happy person.
Best Wishes
Ali Sultaneh

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From: (Anonymous)
2010-05-20 11:12 am (UTC)

I send devices for free

When I can from time to time I send my migraine devices for free to migraine patients by DHL:
Now I will send to USA,( Florida, and Georgia). London.
So 3 boxes each one has 3,5 KG of my migraine devices.
I hope that migraine patients can see my video and do my migraine devices better than I do.
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From: (Anonymous)
2010-05-25 01:04 pm (UTC)

Re: I send devices for free

Sorry if I disturbe you.
I will never post here again.
I wish you very healthy future.
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From: (Anonymous)
2010-05-22 07:14 pm (UTC)

HereI, hi :)

HereI, It is Lou here, from the mutual place that we post. I check in every so often to see if there is an update.

Please take things one step at a time. Has anybody offered the option or possibility of angioplasty? It is a neat alternative to 'slice and dice' :D They can use coils that thread up through from the groin, so very minor wounds, just a puncture mark, rather than full open surgery.

Glad to hear that Alex is doing well. Hope to see you on the mutual place if/when you feel a bit better.
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[User Picture]From: erinnorman
2010-05-22 09:37 pm (UTC)

Re: HereI, hi :)

Its lovely to hear from you and I was thinking about you the other day hoping you'd get in touch! I am going back to that "other place" asap I owe it to everyone who's supported me but I'm so exhausted it feels like a chore to write it all out with my one working hand. Can you email me? senatorvass@gmail.com
Take care
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From: (Anonymous)
2010-05-23 09:06 pm (UTC)

Re: HereI, hi :)

I have emailed you x
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From: (Anonymous)
2010-07-11 06:36 am (UTC)

I sent 5 kg of migraine devices

Who want migraine devices, I sent 5 Kg of my migraine pressure points devices (both kinds) for free to Pen Ort:
Pen Ort
16 Downs Road,

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From: (Anonymous)
2011-01-10 07:37 am (UTC)

Erin Norman - Post a comment

Down with spam. Give creative on the pages of the blog!
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